what age did you get pmr: Hi i would be very... - PMRGCAuk

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what age did you get pmr

zabzab12
zabzab12

Hi i would be very grateful if anyone who was diagnosed with pmr either in their 40s or early 50s could let me know , as 3 doctors now have said my husband is to ypoung to have pmr many thanks karen

50 Replies
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I was just 51 when I got it. No question that it is definitely PMR. My rheumatologist just said I was atypical as was quite young to have it but he never doubted his diagnosis and wasn’t fazed by my age.

I was 52. I was diagnosed within weeks by my GP due to his experience of the disease and this was confirmed by my rheumatologist. It lasted 9 years. I have now been fully recovered for 3 years

tangocharlie
tangocharlie in reply to Faygirl

That gives me hope that PMR can go away, even after 9 years. Great news, so pleased for you

Faygirl
Faygirl in reply to tangocharlie

Hello Tangocharlie

Yes, I had completely given up all hope of recovery. But I religiously stuck to the reduction method I took up yoga and persevered and it paid off. Looking back I wish I had started the yoga much sooner. I also stuck closely to an anti inflammatory diet. I was permanently stuck at 7 mgs when I decided to follow the reduction method it took me the last 3 of the 9 years to get rid of steroids. I have been recovered and steroid free for 3years.

I would have settled to be half the person I was but I am completely recovered with no limitation now aged 64.

My 50’s were wiped out but I am so enjoying my 60’s.

I wish you the best of health going forward

Maggie x

Constance13
Constance13 in reply to Faygirl

Go for it girl. 💃🏃‍♀️💅🍾🍸🥃

Daisyfield
Daisyfield in reply to Faygirl

That’s great to hear. Do you mind me asking - were you completely pain free on pred and during reduction ? And was there a ‘recovery period’ when you stopped pred. Did it take time to get back to ‘normal’ or was it immediate? X

Faygirl
Faygirl in reply to Daisyfield

Hi DaisyfieldNo I had pain every time I made a reduction. But I felt it was steroid addiction that was causing it. So I kept the reduced dose going for a week before I considered increasing the dose back up. Increasing my pain killers to deal with the pain. These were cododamol and codine based. More often than not the pain eased in time for my next reduction. I used the yoga to stretch out my muscles. I was reducing at a very slow rate. To reduced the overall dose by a 1/4 mg it took me 7 weeks.

The muscle stiffness was greatly improved with the yoga. I think I was confusing muscle stiffness with active pmr. This might be why it took me so long to get off steroids. The anti inflammatory diet made a significant improvement to my shoulder pain

I know this method might not work for everyone but looking back if I had not applied myself I would still be taking the steroids

I did not feel I was close to it burning out when I started out taking things into my own hands. The very very slow improvements I managed to achieve drove me on

Maggie

Daisyfield
Daisyfield in reply to Faygirl

Thank you. Really good to hear your story. I think I should do the anti inflammatory diet. I sort of do, but probably need to be strict to make it work.

tangocharlie
tangocharlie in reply to Faygirl

I do yoga and anti-inflam diet. I suspect you were only able to reduce the steroids as the PMR was burning itself out simultaneouosly, probably helped by the other things you did. Various attempts at reducing steroids including coming off failed for me because the PMR was still rampant so reducing oses let it get out of control. You have given me a glimmer of hope though that my 60s will be better than my 50s, thanks so much and all the best x

Hi I was diagnosed at 52 , with PMR , it’s a small percentage at this age I understand , it took a while to be recognised so my symptoms were at a point I could barely get out of bed ,

I was 49 and I was that bad my GP was convinced I had PMR she gave me steroids before seeing the rheumatologist. 2 years down the line I have painful hips (as I have lost some muscle around the top of my thigh) when I try and stand and I am down to 2 mg

I was 54 when I was diagnosed in January 2019

Hi, I have been treated for suspected PMR since Sept this year when I was 49. Waiting to see a rheumatologist on 8th Dec to confirm a diagnosis. Classic symptoms without raised blood markers. Now down to 11mg pred.

I'm certain I had a milder form of PMR from my late 40's with a Neck stiff and aching stiff shoulders, put up with it for years did ask doctor about it his comment we all get stiffer as we get older( twat) . It was not until I seized up completely at 60 hips neck shoulders where all so bad I could not get dressed or lift my arms to wash my armpits. He eventually believed me then. That was 9 years ago still on the pred can't get off it flare up after flare up. Show your doctor this LINK.. cdn.mdedge.com/files/s3fs-p...

I was 72 and the same symptoms as yourself. My doc missed it, and I'd never heard of it. Had to pay to see a private GP and Rheumy. Diagnosed with PMR then went on to get GCA. I too think I was suffering for many years before diagnosis......so awful for you younger ones.

I was 51 - classic signs of painful shoulders that came on quite quickly. Responded to pred 15mgBloods have always been normal.

Was previously v fit and active.

I was first had difficulty getting out of bed on my 50th Birthday. I saw the specialists and was not it was pre menopausal. Eventually diagnosed with PMR after I moved to France.

I was 49, just shy of my 50th

A friend of mine was diagnosed with PMR in her early 40’s. She had it for 11 years.

I was 52. I was told by my GP and one Rheumy that I was too young. My diagnosis was finally confirmed 2 years later by PET scan. That was 8.5 years ago. I still have it but am finally managing a reduction and on my 4th Rheumy! Many are useless!Whoever you saw privately was not helpful at all. People on this forum can advise on "acceptable" Rheumy's who are expert in PMR so that their opinion can be respected. Whereabouts are you ?

Well the NICE guidelines say over 50, but I’m sure I read them the other day and it had been lowered to 40 and PMRPro said something to that effect too. The wording is “rarely under 50” so it doesn’t mean it doesn’t happen and we know that for a fact here. This doesn’t help you though. Here’s the page that says 50 and over anyway. cks.nice.org.uk/topics/poly...

What are his symptoms now and what sort of pattern of timing or location is there? What blood tests did he have and did you get the results?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to SnazzyD

Agree, there is/was somewhere that quoted over 40, but I couldn’t find it either...I was convinced it was NICE!

I think when I read the NICE article you posted recently it mentined both 40 and 50 in different parts

Staplehurst
Staplehurst in reply to SnazzyD

Problem is when that much younger PMR is just not suspected. But I think I had it for years too before it got so bad I couldn't get out of bed....classic !!

That was my problem - my GP said it just never occurred to him given my age, he's only come across it once before, with an elederly man

52 diagnosis but started at 51 had lots of test as I also had weight lost 4stone then my doc said the magic words. Just knowing. Being treated by Doctors only.

Hi,I was 56 when I was diagnosed with PMR last October and it is definitely PMR.

My rheumatologist said I ticked all the boxes in my diagnosis, he also said that although I was fairly young it was not uncommon for it to appear in your 50's

Initially I went to A&E and they thought I had broken my hip, because I was in so much pain.

Steroids although horrible, are doing the trick.

54 here .. I was one of the lucky ones - spoke to GP on phone who ordered bloods. Saw her 5 days later, ESR and CRP raised (along with inability to move at all almost!) and put me straight on steroids. Saw Rheumy 6 weeks later .. dread to think what I’d have been like if I’d had to wait that 6 weeks without Pred!

I developed classical PMR symptoms this September, just as I was turning 55 and retiring from 36 years nursing 😡Very fit and active prior to this. ESR 43 and CRP 51. GP didn’t want to start steroids straight away as ‘you are too young for it’ but repeat bloods two weeks later were the same. By that point I was quite restricted with reduced mobility and pain!Have been on 15mg Prednisone for 2 weeks now. A lot better but still some shoulder discomfort and restricted range of movement. Just joined this forum yesterday and finding it very informative thanks 👍

By the way, I’m not sure my GP would have been so keen to commence treatment if I hadn’t pushed for it. Knowledge is power 😉

Suffererc
Suffererc in reply to Moana55

It always surprises me that GPs are so unaware of the PMR symptoms and reluctant to use steroids. Reading this forum this am, the GP practice Nurses that are on here you would think GPs. Would have better knowledge. Mine was reluctant to give me steroids and I had to wait 3 months. I have in my mind that I may not have been so bad if the steroids were dish out earlier.

Moana55
Moana55 in reply to Suffererc

To be honest I was okay with waiting a couple of weeks before starting Steroids, if only to convince myself it was PMR! I got progressively worse, and realised I had to go on steroids despite my reservations. The GP was quite thorough, ruling out RA etc, and at least physically examined me. It also gave me time to research the condition. I could quote NICE guidelines to him word for word! On the whole he’s been quite good, treating me as PMR despite not being 100% convinced due to my age! Waiting three months must have been awful for you. Hope you are in a better place now!

Suffererc
Suffererc in reply to Moana55

Yes thank you in much better place. Nearly been 3 years now. My GP has been very good and kind. The trouble now is GPs have thes time limits to get you off steroids and they don’t always work. I have found this forum a great support and their knowledge 2nd to none

Your body will tell you what it needs - and that may not be a fixed schedule of reducing dose over 18 months. As you will read often on here, the aim is not to get to zero pred in a certain time, but to always try and find the lowest dose that still manages symptoms and keeps inflammation down, and for many people that means ups and downs. Read all you can, including Kate Gilbert's book so you can discuss your care with doctors.

I am not in a rush. It’s my GP who is in the rush. Like most 2 years is what the decide is when we become healthy again

The Drs have this idea in their heads it'll last 2 years and burn out but that is rarely the case. Everyone is different. The median is 5.9 years so that means some get over it quickly, others more slowly, and there is no way at the beginning of predicting how long you will have it

PMRpro
PMRproAmbassador

I was 51 when mine started but it took 5 years to get a diagnosis - not on the basis of age but because my blood markers were in normal range although not normal for me. None of the symptoms had changed in the meantime, just got worse.

The blinkered who believe you have to be IRO 70 to have PMR don't have good maths skills (the AVERAGE age at DIAGNOSIS is 72) as the incidence increases with age and very many over 75s have had it - doesn't mean there aren't younger cases though holding the average age below that. And because so many refuse to say PMR for younger patients, those figures remain inaccurate and falsely high. It is much the same for the younger patients who are told it is fibromyalgia but who have raised inflammatory markers. Fibro is NOT an inflammatory disorder ans DOESN'T respond to pred.

I was 46 the first time I was given a PMR diagnosis. At that time I chose not to take Prednisolone. It went into remission after about 2 years. I was diagnosed again when I was 54. This time it was much much worse and I had no option but to take Prednisolone. My initial dose was 30mg a day and now 4 years later I am on 5mg. My Rheumatologist wants me to stay at 5mg for now. My blood inflammatory markers have always been quite high and mirror how I feel. There are plenty of us diagnosed in our early 50s on here.

54

I have a steroid responsive inflammatory condition - presumed PMR at the moment pending further tests. This started at 46.

Its more likely to be something else but not impossible to be PMR under 50 therefore just be sure he has been fully checked out for all possibilities before settling on that diagnosis.

Has he been referred to rheumatology?

Go here on this site and read it all up.

healthunlocked.com/pmrgcauk...

Read the question and answers and remember that although it is mainly talking about GCA, it is thought that most times the person has not been diagnosed with PMR, probably because of their age and that can and does sometimes lead to GCA.

I was 66 when I developed both GCA and PMR, a more ''classic'' age for diagnosis. However I've learned from this forum that these conditions can occur in much younger people, so I have warned my children aged 50, nearly 49 and 46 that, if they have any possible symptoms of either disease, they are to have them thoroughly checked out and not to be fobbed off by being told they are too young. I also have a ''baby'' of 34 - maybe I should prepare her for possibilities too.

I was misdiagnosed at 53 and I was told I was too young for this condition. The thinking was that you needed to be in the 70's to have PMR so the first rheumy diagnosed RA. The second rheumy diagnosed it correctly. If your gut feeling is disagreeing with your doctor, like mine did, find another. I would be on Methotrexate now if I didn't look for another doctor.

I was dx by GP aged 51, but things had been bubbling for over a year before that, including forzen shoulders, stiff neck, hips etc. After 3 years I asked to be referred to a rheumy as couldn't get below 5 Pred, and at that point, aged 54 I was told I couldn't possibly have PMR as I was too young. A PET CT scan eventually confirmed it was PMR all along. Had it 9-10 years now and atm it's flared up worse than ever.

I was 52. The young GP identified it immediately as soon as she saw my blood results, but I needed more convincing. Every test under the sun including a PET scan a couple of months later confirmed the diagnosis. I have been on steroids since December 2019, reducing slowly and doing well. There is a free talk by Prof Dasgupta tomorrow at 3 pm - he is talking about diagnosis of PRM - perhaps you should tune in? There is a post by Fran_Benson mentioning it if you are interested. Good luck.

72 diagnosed this time last year

I was 53 in 2017, now tapering Prednisone after relapse last November.

I was 54. Managed by my GP. After nearly 6 years I’m down to 1mg pred a day. Feeling hopeful but I have suffered some side effects from the pred😟. This forum has been brilliant support. I hope your husband gets a diagnosis and treatment soon.

Reading these stories there does seem to be a link or some kind of correlation between getting PMR in your 50s and it lasting longer than for older people who get it in their 70s or 80s. Maybe one of the sub-types PMRPro and Dr Mackie mention

48. Last year.

Diagnosed august 2020 at 55, with GCA and PMR

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